I don’t know what to say

Hi everyone 

please don’t get me wrong am not knocking Macmillan on here am not I have had support from here am not it’s just in my area,I did ring TRIAGE 2weeks ago as I had a infection in my big toe I was told to ring my GP and if a get any other problems to ring 111 which I thought was strange as the last time I did that my consultant told me I should have rang triage all I can think is cos am not having treatment. I go for my scan on the 9th April and see my consultant on thee 15th which will be over the phone.

thanks 

free12 

Hello Free12 I am so sorry that you are going through this awful time. You deserve better support, and I really hope you get it. Your family may need help too. Everyone here has already come up with lots of suggestions, I hope you feel that there is some comfort here. 

Xx

Hi Free12,

I know what you mean, my support seems to be very disjointed and it's hard to know who to turn to when things crop up.

The Clatterbridge Cancer Centre has a 24 hour hotline, but all they ever do is tell you to go to A&E, so they're pointless. I speak to the oncologist every few months when there's been a scan. I have a bi-monthly call with a doctor at the local hospice, just to check on progress. For medicines, I just fill out a web form for my GP and a few days later I get a text from the pharmacy to tell me my prescription is ready.

When my father in law was dying of cancer (in Kent), they had a dedicated nurse that they could ring or email and she would advise on anything, even a 'should we be expecting this?' type question. I have nothing like that up here in Merseyside.

I think perhaps we should be making more noise, probably to our GPs.

Stuart x

Hi stuart

i go to clatterbridge as I live in Cheshire,i went to Maggie at clatterbridge what a waste of time that was was no help as I was still working but now am on long term sick, still no help am the same as you only talk to my consultant when I have had a scan but nothing else I have tried but no call back am tired of trying to get support now.

free12 x

The care package in SW Cambs is excellent!

Every 3 wks my bloods nurse, Mel, visits prior to the 3 wkly infusion. On the same day, my onc calls to confirm all is well enough for the treatment which goes ahead on the Thursday.

Once a mth, my CNS, JJ, emails to check if everything is ok. Every 3 mths my McM Palliative Care specialist, Kelly, gets in touch to make sure I'm good and liaises with Mel throughout the rest of the time, as & when req'd.

The nurses & doctors at Woodlands Treatment Centre are marvellous!

Honestly I thought that this was how EVERYONE was treated...

My only disappointment has been having the chemo element to my latest treatment withdrawn due to funding issues (my atezo was "Off-Reservation" funded by the drug company as it was prior to NICE approval) but that aside, I do not have any criticisms AT ALL.

I hope you can all find the energy to persevere with getting the treatment & care we all deserve...

Hi SiT

i wish it was like that for me but hay, am glad you are getting all the support you need 

free12 xxx

Hi Anndanv

I asked about trials and different treatment and we were told that if I went out of my area we would have to pay, my husband would have sold the house for me to live if we had a guarantee it would save me but she could not give us that 

free12 xx

I'm in Sheffield and am very happy with my care so far. I'm not sure whether the same support will be available once my chemotherapy has ended. I thought the 24 hour support was just for those receiving treatment.

Having said that the support you have received has been sadly lacking Free12, I hope that your scan and telephone appointment go well, and that the easing in Lockdown allow you to get more support from family and friends. 

Best wishes 

Hi salis 

am sorry but I thought it did not matter if you are having treatment or not it’s still cancer and you still need support to cope with your cancer not to be forgotten about because treatment has stopped working for you that’s when you need support the most. I am happy that you are happy with the support you are getting 

All the best 

free12

I’m in sheffield too at western park hospital and I have a cancer nurse specialist who I can ring and leave a message for at anytime and also the reception no links to a message which gives you a 24 hour number you can ring to be triaged at anytime. I was rushed to a different hospital late one night with suspected sepsis and my wife rang the triage number at around 10:30pm and they called her back within 10 minutes and then contacted the hospital I was at to tell them my info to ensure my treatment was taken into consideration